To Tell or Not to Tell? Disclosing Health Problems at Work

I have an autoimmune disease called Sjogren’s syndrome, more common but less well-known than its kissing cousin, lupus. Now, please permit me to saw off the limb I’ve just climbed out on.

That’s how it often feels when disclosing chronic illness. You worry that people will find you lacking. You think your current or potential employer or client will fear that you can’t do the job. Perhaps, most important, in a culture that prizes productivity, you wonder how you will maintain your sense of self-esteem and self-worth. More than a decade ago, detailing my life with chronic illness, I wrote, “Writing is more than what I do to make a living. Being a writer is who I am.”

When your sense of self is tied up with your work, admitting to any limitations can be scary. I’ve been lucky. I’ve worked for employers who offered flexible schedules, and I have a skill that allows me to work for myself when I need to. Still, I’ve encountered disbelief that my need to leave early or work a reduced schedule is about illness and not about wanting to slack off. My experiences are not unusual.

A Cornell University study found that nearly three-quarters of people with a disability cited the risk of being fired or not being hired as reasons not to disclose health problems at work. They also feared the risk of being treated differently. Laws such as the 1990 Americans with Disabilities Act (ADA), amended and expanded in 2008, and Section 503 of the Rehabilitation Act, also recently amended, protect the rights of individuals with disabilities from discrimination in hiring. The ADA outlines individuals’ rights to seek reasonable accommodations. However, you can’t legislate attitudes.

The question of self-disclosure is especially problematic for the nearly one in five Americans who has a diagnosed mental illness. The Disability Management Employer Coalition found that discrimination associated with receiving treatment for a psychological problem has dramatically increased over the past two years.  A study out of Britain found that seven in 10 bosses believe that mental health problems do not warrant time off from work. This is despite the fact that nearly one in four of these employers conceded they had experienced some form of mental illness themselves.

If you feel that you want or need to disclose a physical or mental health disability at work, how should you go about it? These guidelines may help.

1. Get your ducks in a row. Before you do anything, do your due diligence, advises clinician and author Patricia A. Fennell, M.S.W., LCSW-R, founder and president of Albany Health Management Associates. Learn about (1) your state laws regarding disability (search your state’s official government website for “office on disability”); (2) your employer’s policies on employees with disabilities; and (3) how individuals with disabilities in your organization have fared. Stated policy and the reality of how people are treated may differ, Fennell says, noting that you have to exercise some discretion in making these inquiries.

2. Determine why you want to disclose. Common reasons for self-disclosure include the need for some sort of accommodation (e.g., time off for recurring medical appointments or an ergonomic work station). In addition, those who have an invisible disability may find that the energy involved in hiding their needs is detrimental to their health. I don’t write at night, when fatigue gets the better of me. It’s easier for me to state that upfront rather than pushing beyond my limits and producing lower-quality work.

3. Decide what you are going to say. Employers want to know less about the details of your condition and more about how it will affect your performance on the job. You need to understand what your employer or prospective employer already knows about your condition, what they need to know, and in what terms you should describe it, Fennell says. Especially if your condition causes some symptoms that might be unpleasant to discuss in public, you are well advised to “keep it simple,” says author and career coach Rosalind Joffe. “Be as public as you need to be and as private as you want to be,” Joffe adds.

4. Seek help if you need it. Deciding how, when, and why to disclose health problems is not something to take lightly, Fennell says. She and Joffe are among those who help individuals with these decisions. You may also find information online. For example, the Center for Psychiatric Rehabilitation at Boston University offers information for Disclosing Your Disability to an Employer. The Job Accommodation Network is a service of the U.S. Department of Labor that offers free, confidential guidance on workplace accommodations and disability employment issues. Seek support from patient advocacy groups, but be careful about taking any legal or medical advice from those not qualified to offer it.

5. Understand that you are not your illness. This is perhaps the most difficult task of all. When the very first thing someone who meets you asks is, “What do you do?” it can be difficult to separate what you do from who you are. Take care not to work doubly hard to prove yourself (this is a huge problem for many of us with invisible illnesses). If all else fails, reread my post on fear of failure and remember, “you’ve got this.” I may not be quite as well-known or highly paid as my fellow Sjogren’s survivor Venus Williams, but I’m doing OK for myself, and so are you!